Anyone have a "Go To" answer when people wonder why you don't "LOOK" sick?

I have had many questioning remarks from friends, family, and people in our church and community. I am still in "limboland" and not sure how to respond to them.

Questions/comments like, "You don't look sick" or "You LOOK great, are you better?"...

OR my mother and sister, "you need to snap OUT of it,  you are just depressed, it is a mental thing"

Or my well meaning co worker who has Lupus, "You just have to be tough and push through the weakness, that is what I do"

My ?...Does anyone have a "go to" answer for these statements or questions? I feel like I am constantly trying to explain this everywhere I turn. It would be a little easier if I had a diagnosis, but no such luck =-(

[Buffy1970]

Tell them it's b/c it's all in your head... (sorry, bad humor).

Are these friends?  Do they want you to look bad on top of feeling awful?  Tell them you got lucky about one thing at least... that you can at least look decent.

Luck.

[Dagun]

I am just getting used to keep my mouth closed, or if I am asked, I say "I'm ok" with a tone that says "do not wanna go there" exept to the very few peoble that really listen and care. I have always been strong and healthy, my husband too, but the worst thing for me is that a year before my problems started, my husband had a strange sickness (fainting, even with open eyes and then getting very high fever for 24 hours, never longer and then just ok! He had this nearly monthly for over a year. This year it has just happened twice). So now it seems like some folks think "oh yes she just want the attention that she is missing" ;) it is just great...
My best,
Dagun

[ku111]

I get this about my 12 yr old son all the time.  Ug!  I just got to the point where I understand that they don't understand.  Heck, I still don't understand and I have to watch my son go through this everyday.  But, I know and he knows and this is all that matters.  People close to us and those who give a hoot know.  For all the others, I just don't worry about the comments.  We have bigger battles to fight, right?  I use my energy for the battles that count.  Hang in there.  Very frusterating.  We know and there are a lot of people here who care.  I wish you the very best and I am so glad you can look so good on the outside and feel so bad!lol  If you wanted attention, I bet you could come up with much more fun and better things to do.  Have a great day!  Try not to look so good, right!LOL  

[COBOB]

Try some of the things suggested at http://www.invisibledisabilities.org/  or (for the adults) try referring them to the site.  They have a booklet at http://www.invisibledisabilities.org/educate/butyoulookgood/

Bob

[Mlkjmom]

Thank you to everyone!

Other than my mom and one of my sisters, No one is "mean spirited" in their remarks. (At least I don't think so) I think just curious and wondering about how I am doing.

It is just overwhelming, especially when we are @ church or one of the kiddos sporting events.

[kelly97]

I've heard that before, too, from co-workers and from extended family.  "You must be doing good, because you look good."  Then you're left feeling like you have to defend yourself so they know that you're not over-exaggerating.  

Unfortunately, that seems to be the case with many people who have a chronic illness. And unless they see you in a wheelchair, then they don't really see you as "disabled" even though your life has changed drastically from what you previously considered "normal."

-Kelly    

[Guitar_grrrl]

I often just say, "I wish I felt as good as I look."  If they just say, "hey, Lisa, you look great!", I just say "Thank you."

[HVAC]

People just do not get it and they won't so I do not bother. Sometimes they are trying to be encouraging and do not know what to say, I take the spirt the remark is given. Other time people are snarky. The people I really care about who see me day to day do. I just smile sweetly. In the South we have a saying "Bless your little heart" which translates I think you are an idiot. If someone is not kind I say this with a sweet smile and add whatever I want. Why thank you bless your little heart for saying that.

Alex

[maxthecat9196]

I still haven't figured out what to say about my ms symptoms.  I also have Reflex Sympathetic Dystrophy, and when someone asks me about my affected foot/leg, I say "it's still attached, and there's no gangrene- so it's all good".  That usually gets a laugh.

It is hard to know the best way to handle it.  I attend religious meetings up to three times a week.  Usually I have to reassure everyone (individually).  I've noticed, because I have stumbled or fallen several times, that my friends are nervous when I am trying to walk on my own.  Not sure how to make everyone feel better.

Out in public, my husband and I have gotten the impression that people are almost offended that a disabled person (plus I am an overweight person) would be out in public.  (That could just be because of where I live.)

Tammy

[figuerpa]

I agree with Alex, people will never understand. Just say thanks and move on. I get it all the time and I just say "well thank you" when I am really thinking "if you could only see me inside". I have learned to understand that the only people who truly understand are the ones who are suffering on the inside but look "great" on the outside.

Most people mean well when they say things like that. Guessing when they say that that maybe they think it has mysteriously dissappeared and all is good now, but just take it with a grain of salt. I always said I wish my family could live in my body for just one week, then maybe they would understand. LOL

Paula

[tingletingle]

Great question,

I attended a family get together of about 30 people shortly after being diagnosed and everyone was looking to 'see' my disability. Oh, he looks normal. He must be okay. What's the big deal anyway.

I was amazed that some family seemed put out that I was somehow stealing the attention unnecessarily away from them.

Fortunately MS is a recognised disease just like bowel cancer, cardiovascular disease, lung cancer, brain cancer etc etc. I find with most diseases you can't really tell that the person is sick except on bad days or when undergoing chemo etc. I attended a health conference on Sunday with around 400 other people who had all sorts of cancer, MS and diseases. It was one of the healthiest, most positive crowds I have ever had the priviledge to experience.

So I just say to the  'you look great'  people thanks very much, I feel great too, just have abit of strange electricity, numbness and tingling running over my body but nothing to worry about. But, how are you doing more to the point?

Blessings
Alex

[twopack]

I agree with Alex on this one for sure - and the other Alex too :).  

When people don't have an illness it is impossible for them to understand what it's like.  Many don't try but some people who ask questions are actually making an awkard request for information.

If it's clear a person is asking how I can be walking, working and smiling when I have a disease they always thought was rapidly progressive and debilitating (breathe...) I'm willing to spend lots of time and effort to explain MS.  Other than that, there's really no need to work hard to convince anyone I feel like crap that day.  It only reinforces my own misery and makes me sound like I'd rather complain than take a compliment.

I like hearing how the rest of you handle this one.  I love Buffy's explanation that she just got lucky on that one!

Mary

[drsdonthelp]

Hi everyone,, well eventhough I am not dx'd with MS but having  a clinical dx of Lyme, I obviously can relate to the " You look good,,, are you feeling better".... Hmmmm,, How do you answer that,,,?? I usually respond with a heartfelt Thank You and say, "With all I have been through over the past 10 years, I appreciate that very much" It will either give the uninformed people a clue that you have been through some tough times, without getting into too much detail. If they are curious, I will fill them in, if not, then I just let it be.

I know that I "look" different then I used to look before my eye surgeries, and I sometimes hear, well, we are ALL getting older, no one stays the same, and that sometimes gets on my nerves.. I listen to other people complain of having grey hair, or a wrinkle, ( normal aging stuff) and if I say, I can't stand how crooked my eyes are or one eye appears lower and more sunken in than the other, I hear, "you look fine". The people that complain of their aging hair color, can easily fix it  with some hair dye if  it bothers them that much, but me, I have to see my changes daily and there is nothing that I can do to fix it.

Sometimes even my "crooked eyes" are not that noticeable to others,  so to some people (THEY CAN'T SEE IT) and say they can't tell I have had any problems.....

  and that's when it's frustrating..
..  
That's when I say..... , "Well ,  You are seeing me through YOUR eyes, but you're not seeing what I see through MY eyes,

I think that is what makes people realize that my disability is not always visible....unless I fall on my fricking face because I missed a step!!  LOL

Sorry, couldn't resist the last part, .. :)  Ha Ha
Pam

[ku111]

Pam-I so appreciate your humor!  I can be having a not-so-good day and you still manage to make me smile and chuckle!  If you happen to miss a step, I am here to lend you a hand.  Now, I have nothing wrong with me but I still miss steps all the time.  Can you explain that? LOL

Taking Jordan for blood work in am.  Want Lyme and Lupus tested!  Thanks!  I hope you have a wonderful holiday!  Be safe.  Live, Laugh & Love...

[Sparkysarah]

I went into a disabled toilet the other day and it was being used by another lady who had not locked the door. She was just about to come out andt she said to me.."when you are disabled you never lock the door in case you have a fall". Well I could have taken this that there was an implication that she had her doubts that I had a disability and should NOT have been using this toilet, or I could have just taken it that she was explaining why she had not locked the door. Actually there was a little bit of both in here for me and there was no reason for her to think I had a disability so I just let it go..I am sure she had her own problems.  I prefer to look good and get positive comments than not feel good about myself but generally just take people's comments lightly. I genuinely believe that life is too precious to swet the small stuff.

Love Sarah x

[drsdonthelp]

Ha Ha Ha, LOL,,, I am glad I can make you smile!! I know how hard life can get, and if you can't laugh it off, you might as well be dead, right?!!

I am still alive, so that makes me happy, the challenges I face daily are just that to me,,, I am the type of person that will make fun of myself before someone else does, this way my feelings don't get hurt, ( I am very sensitive and emotional )

Thanks for "lending me your hand if I fall" I will do the same for you, :)

Be careful of those steps, and slopes , they are very mean to people with disabilities! LOL

Glad to hear Jordan is getting more blood work done, hopefully it will give a glimpse of what he is dealing with and get the right treatment. He is so lucky he has you to fight for an answer and not a brush off!

Good luck, be safe, and Happy Thanksgiving!!!
Pam :)

[wonko]

If someone tells me that I don't look sick, I tell them "Thanks, and YOU don't look STUPID!"

OK, I've never actually had the guts to execute that one....But I've said it in my head many a time.

I'm like drsdonthelp in that I don't have MS, I have chronic Lyme.  But I stumbled on this thread and couldn't help but want to share my zinger.

Overall, I think it's good to keep in perspective that people probably mean well when they say you do not look sick.  But I can relate that it can come across as some sort of threat to the validity of your illness.  (While I have a dx, it's not like the average Joe knows a thing about chronic Lyme or the implications.  So I can very much so related to feeling a bit sensitive about how folks perceive my illness.)

Take care and hold your head high:  Being sick is NOT a character flaw, even if some folks just don't understand what you are going through and feeling.

[Mlkjmom]

LOL @ wonko and drsdonthelp!! Thank you for helping me see the humor in this! I'm considering investing in a sandwich board to wear when @ school, church and family functions.

It would include; I do not have a diagnosis yet and am not sure when I will, I am still quite weak and tingle all over most of the time, I am back to work and don't know when I will be able to go back, my husband and kiddos are taking it well, but have good days and bad days just like I do. Thank you for asking :)

[summerluvr]

your comments about your eyes are interesting.  I have strabismus (born with it) and had two eye muscle straightening surgeries.  It is straighter now with glasses but when I take them off it points in alot. few people mention it, and I'm so used it as I've had it all my life.  The odd time I get someone commenting "who are you speaking to" becasue they think I'm looking somewhere else, when in fact I'm looking at them but my eye is wonky.

When people sayd you don't look sick, I say "well what is a sick person supposed to look like?"  

Even doing my first chemo I did not loose my hair etc. so I told people I'm on two chemo drugs and they were like, oh but you look well.  I told them well thanks I'm trying to get through it but I'm not feeling that well.

Also I don't have MS, I have Multiple Myeloma that is in remission so I'm feeling pretty good right now!  

[drsdonthelp]

Mik, Hi, and I am glad that I can help you see the humor,,LOL

it's funny how people deal with stresses in life, I for one, will crack up if I lose my balance in the shower, and pull the whole rod and curtain down on top of me with shampoo bottles hitting me in the head, while I cry in pain at the same time.. ( I am dead serious, that happened!!) I don't know if its just my mechanism of dealing with certain situations or what?

I think it has alot to do with my anti- depressant, I call it my "HAPPY PILL" it definately helps me cope with alot, especially "ignorant people" that think that there is a certain "Look" to what a sick person looks like. I think I would have gone off on a few if I didn't have my happy pill, LOL

summerluver, Hello, here's my low down on my eyes...
I have Graves Eye Disease, my eyes were protruding in 2005, by 2006 I had radiation to settle the disease enough reach "burn out" phase to have orbital decompression surgery. I had that surgery in 2007.

My eyes shifted and one eye drifted in. I then had eye muscle surgery with adjustable sutures, but I still had double vision. Just recently, I had orbital implants becuase my eyes were sinking in too far and had some pretty bad visual impairments. Right now , I wear a prism in my glasses. If I don't have my glasses on, I have to close one eye because i just can't see.

Even with my glasses on, I see a ghost image and it's still like a faint double vision. my eyes tip down slightly and it makes it hard for me to squint to block out bright likes, so I am like a vampire coming out of a cave and getting struck by bright light!!! LOL

I know people can see the difference, it is obvious, but I will do my best  to put makeup on and "look ok", it takes a while and alot of pokes in the eye and searching for which eye I am going to focus on when applying, but I get it done, when I need to.
I don't know how everyone feels here about that, but for me, I don't want to look sick,,, I want to try to look my best even when i feel absolutely down right horrible. Well, in that case, I stay home with my hair up in my bun, and no makeup on with a pair of sweats! (That is my everyday look these days)

Today I went to my dad's house first for some appetizers before the big meal at my mom's,, and my brothers and my brother's girlfriend looked at me and said, wow, you look great, I said "Thank you, see, I can clean up nice!" We all started to laugh because just the night before I had seen them and I was in so much pain that I was cringing and wishing I could go to bed.

Ok, I am done babbling now, sorry about that! LOL
Happy Thanksgiving,
Pam :)

[Ojibajo]

My aunt had a come back once to "you look good" that I thought was pretty funny. She said, "well clothes and make-up help."

I don't bother trying to explain to people. They don't get it.

[Ojibajo]

My aunt had a come back once to "you look good" that I thought was pretty funny. She said, "well clothes and make-up help."

I don't bother trying to explain to people. They don't get it.

[Sumanadevii]

My family is very supportive but there is extended family and (coughs) friends that have no clue.  It is a waste of time to explain to them the form of MS I have and how it differs from other forms.  So......

I let them begin, look right past them, and make a comment, "Oh, look at her beautiful necklace." as I look to another group.  Then I ask my husband (I am usually in a wheelchair) to take me over to the group so I can compliment her.

Let the gossips have fun.  I ignore them.  And ya know, it seems to really stir them up more.  I rather enjoy it.